Methodological advances in patient-centered rare disease research: the UTHealth Houston Turner Syndrome Society of the United States research registry is a dataset published in Orphanet Journal of Rare Diseases (2024). On theSindex it has a DataRank of 0.104, placing it in the top 77.8% of the data-sharing corpus. It has been cited 1 time. Its calibrated FAIR score is 50/100.
Ranks in the top 78% for downstream scientific impact
Linked data & code
DataRank reads this dataset's downstream impact straight off the citation graph — no black box, no proprietary weighting. How is this computed?
FAIR checklist signals are shown for context only and do not affect DataRank scoring.
Full FAIR picture · advisory
The headline score is computed from the scored criteria — the fact-shaped checks (a repository, an accession, a licence) that two independent models agree on. The advisory criteria below are real FAIR guidance but rest on judgment calls that models read differently, so they inform without moving the number.
No persistent identifier (DOI, accession, handle, etc.) is given for the registry data.
RDA-F1-01D — FAIR Data Maturity Model: 'Data is identified by a persistent identifier' (priorit · RDA-F1-02D — FAIR Data Maturity Model: 'Data is identified by a globally unique identifier' · FsF-F1-02D — F-UJI/FAIRsFAIR: 'Data is assigned a persistent identifier'
No data repository is named; the data are held within the article and supplementary material. [majority verdict 'no' (4/5 passes agreed)]
RDA-F4-01M — FAIR Data Maturity Model: metadata is offered so it can be harvested and indexed ( · NIH DMS Policy Element 4 (NOT-OD-21-014) — name the repository where data will be archived · NSTC Desirable Characteristics of Data Repositories (2022) — 'Long-Term Sustainability', 'Reten
No identifier for the dataset appears anywhere in the text, whether in the reference list or body.
FORCE11 Joint Declaration of Data Citation Principles (2014) — data should be cited as a first- · RDA-F3-01M — metadata clearly and explicitly includes the identifier of the data it describes · FsF-F3-01M — F-UJI: 'Metadata includes the identifier of the data it describes'
Advisory · not in the published score
“Data generated or analyzed during this study are included in this published article and its supplementary information files. If datasets of interest are not included in this study, they are available upon request to the corresponding author, Dr. Siddharth K. Prakash at [email protected].”
The data availability statement primarily points to the article and supplementary files (Colavizza category 2), with an additional request option.
Colavizza, Hrynaszkiewicz, Staden, Whitaker & McGillivray (2020), 'The citation advantage of li · Springer Nature research data policy — Data Availability Statements: standard statement templat · RDA-F3-01M — metadata clearly and explicitly includes the identifier of the data it describes
“The initial data included a total of 957 participant records with two instruments: one foundational survey with 73 recoded variables and one instrument with participant contact and privacy preferences.”— not found in the paper; verdict downgraded
The paper describes the dataset's content and size in running prose, without an itemised inventory like a section or table. [downgraded to 'no' — no verifiable quote from the paper]
RDA-F2-01M — 'Rich metadata is provided to allow discovery' (priority Essential) · FsF-F2-01M — F-UJI: 'Metadata includes descriptive core elements to support data findability' · FsF-R1-01MD — F-UJI: 'Metadata specifies the content of the data'
“Data generated or analyzed during this study are included in this published article and its supplementary information files.”
The paper states that the data are included in the open-access article and supplementary files, providing an unconditional route. [majority verdict 'yes' (4/5 passes agreed)]
RDA-A1.1-01D — 'Data is accessible through a free access protocol' · FsF-A1-01M — F-UJI: 'Metadata contains access level and access conditions of the data' · NSTC Desirable Characteristics of Data Repositories (2022) — 'Free and Easy Access'
Advisory · not in the published score
“Data generated or analyzed during this study are included in this published article and its supplementary information files.”
No explicit access-level label is used; the text describes the action of accessing the data within the article, requiring inference. [majority verdict 'partial' (3/5 passes agreed)]
FsF-A1-01M — F-UJI: 'Metadata contains access level and access conditions of the data' · RDA-A1-01M — metadata contains information to enable the user to get access to the data · COAR Controlled Vocabularies — Access Rights v1.0 (open / embargoed / restricted / metadata-onl
“TSSR researchers who wish to access TSRR participants or data must submit research proposals to the TSSUS Scientific Advisory Board (SAB) for review.”— not found in the paper; verdict downgraded
The paper names the TSSUS Scientific Advisory Board as the institutional gatekeeper for accessing the registry data. [downgraded to 'partial' — no verifiable quote from the paper]
NIH Genomic Data Sharing Policy (NOT-OD-14-124) — controlled-access via a Data Access Committee · RDA-A1.2-01D — 'Data is accessible through an access protocol that supports authentication and · NIH DMS Policy Element 5 (NOT-OD-21-014) — Access, Distribution, or Reuse Considerations (conse
No sentence in the paper states how long the data will remain available or a persistence commitment. [majority verdict 'no' (4/5 passes agreed)]
NIH DMS Plan Element 4 (NOT-OD-21-014) — Data Preservation, Access, and Associated Timelines · NSTC Desirable Characteristics (2022), Organizational Infrastructure: 'Retention Policy' · RDA-A2-01M — 'Metadata is guaranteed to remain available after data is no longer available'
“registry data were exported from PEER as a tab-delimited text file”
The paper names 'tab-delimited text file' (TSV), which is an open, community-standard format. [majority verdict 'yes' (3/5 passes agreed)]
FsF-R1.3-02D — F-UJI: 'Data is available in a file format recommended by the target research co · RDA-R1.3-02D — data is expressed in a machine-understandable community standard · RDA-I1-01D — data uses a knowledge representation expressed in a standardised format
Advisory · not in the published score
No data or metadata community standard (e.g., MIAME, GO, Dublin Core) is named for the data.
RDA-R1.3-01M — 'Metadata complies with a community standard' (priority Essential) · RDA-R1.3-01D — 'Data complies with a community standard' · RDA-I2-01M — '(Meta)data use vocabularies that follow FAIR principles'
No identifier for an external resource (e.g., source dataset, database, code) is given in the text.
RDA-I3-01M — '(meta)data include references to other (meta)data' · RDA-I3-03M — 'metadata includes qualified references to other metadata' · FsF-I3-01M — F-UJI: 'Metadata includes links between the data and its related entities'
“The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.”
The paper attaches the CC0 Public Domain Dedication licence to the data, which is an open standard licence.
RDA-R1.1-01M — 'Metadata includes information about the licence under which the data can be reu · RDA-R1.1-02M — 'Metadata refers to a standard reuse licence' · RDA-R1.1-03M — 'Metadata refers to a machine-understandable reuse licence'
No version token or date is given to identify the snapshot of the data. [majority verdict 'no' (2/5 passes agreed)]
DataCite Metadata Schema 4.6 — the 'Version' property · RDA-R1.2-01M — provenance information (which version was used is provenance) · NSTC Desirable Characteristics of Data Repositories (2022) — 'Provenance', 'Retention Policy'
“The REDCap survey routing system was created by installing a custom macro in Microsoft Outlook Visual Basic for Apps (VBA, Supplementary 2 Data).”
The code is provided as supplementary material, not in a machine-resolvable repository or archive. [majority verdict 'partial' (3/5 passes agreed)]
NIH DMS Policy Element 2 (NOT-OD-21-014) — 'Related Tools, Software and/or Code' · FAIR4RS Principles v1.0 (Chue Hong et al., 2022; RDA/FORCE11/ReSA) — FAIR Principles for Resear · FORCE11 Software Citation Principles (Smith, Katz & Niemeyer, 2016, PeerJ CS 2:e86)
“This work was supported in part by NIH/NCATS grants UL1 TR000445 and UL1 TR001105.”
The paper gives specific grant numbers (UL1 TR000445, UL1 TR001105) attached to the named funder NIH/NCATS.
DataCite Metadata Schema 4.6 — 'FundingReference' property (funderName, funderIdentifier, award · Crossref Funder Registry — canonical funder identifiers for funding metadata · RDA-F2-01M — rich metadata provided to allow discovery (funding is part of the descriptive reco
Advisory · not in the published score
“To create TSRR version 2, registry data were exported from PEER as a tab-delimited text file, transformed into a data frame using a custom python script, and imported into UTHealth Houston REDCap after quality control and de-identification (Supplemental 1 Data).”— not found in the paper; verdict downgraded
The paper names specific tools and software (PEER, REDCap, custom python script) used to produce the data. [downgraded to 'partial' — no verifiable quote from the paper] [majority verdict 'partial' (2/5 passes agreed)]
RDA-R1.2-01M — 'Metadata includes provenance information according to community- specific standa · FsF-R1.2-01M — F-UJI: 'Metadata includes provenance information about data creation or generati · W3C PROV-O (W3C Recommendation, 2013) — the entity/activity/agent model of provenance
No documentation object (README, data dictionary) is named, and no variable-definition table is provided inside the article.
RDA-R1-01M — '(Meta)data are richly described with a plurality of accurate and relevant attribu · FsF-R1-01MD — F-UJI: 'Metadata specifies the content of the data' · NIH DMS Policy Element 3 (NOT-OD-21-014) — Standards (documentation and metadata to accompany t
Calibrated FAIR score — a parallel quality metric, independent of the DataRank citation score. See the full evaluation →
Base Score Contribution
0.104
From this paper's citation signal
Citation Network Contribution
0
Citation network not refreshed for this result
This paper's DataRank is currently driven only by its base citation score. Citation network data was not refreshed for this result.
Learn more about DataRank methodology →National Center for Advancing Translational Sciences
Grant: UL1 TR001105
National Center for Advancing Translational Sciences
Grant: UL1 TR000445
Turner Syndrome Society of the United States
Grant: Turner Syndrome Society of the United States
National Institutes of Health
Grant: 4UL1TR001105-04
UT Southwestern Center for Translational Medicine (UL1/KL2/TL1)
National Institutes of Health
Grant: 6UL1TR000445-11
The Vanderbilt Institute for Clinical and Translational Research (VICTR)
FWCI
0.38
Citation Percentile
0.6%
Citation Trend
Fields of Study
MeSH Terms
Keywords
Sustainable Development Goals